Blood & Marrow Transplant Patient Support

Care Partner Support Groups

A care-partner is a supportive person who helps a blood and marrow transplant (BMT) patient through the blood and marrow transplant process, sharing in the experience. Your care-partner might be your spouse, a family member, or trusted friend. Patients who have care-partners during their hospitalizations have been found to have better medical outcomes.

Although the medical caregivers in the hospital unit will meet your physical needs for care, a care partner helps keep you, as a patient, focused on your goals and grounded in a meaningful relationship beyond the sometimes all-consuming illness experience.

While all blood and marrow transplant patients benefit from having care-partners with them during an inpatient hospital stay, care-partner requirements vary in the outpatient setting, based on your type of transplant.

Allogeneic, Reduced Intensity Allogeneic and Mini Allogeneic Blood and Marrow Transplants

Requirements:

• Patients having allogeneic, reduced intensity allogeneic and mini allogeneic blood and marrow transplants must have a care-partner stay with them 24-hours a day when they are discharged from the hospital for at least the first 100 days post-transplant.
• Patients and care-partners must stay within a one-hour drive of Cleveland Clinic's main campus.
• Patients may have more than 1 care-partner; we recommend no more than 2-3 care partners.

Your care-partner should be supportive, as well as willing to provide care such as:

• Communication with the BMT team when there is a problem (for example: fevers, bleeding, changes in mental state, severe nausea and vomiting, or uncontrolled pain)
• Transportation to and from the transplant clinic as needed
• Care for the central venous catheter as instructed
• Assistance with medications and IV medications
• Assistance with nutritional needs
• Assistance in keeping the patient's home or living area clean

All allogeneic and mini allogeneic patients as well as their care-partners will be asked to sign our care partner agreement after meeting with their social worker and establishing a good care partner plan.

Autologous Blood and Marrow Transplants

Requirements:

• Patients having autologous blood and marrow transplants may be required to stay within a one-hour drive from Cleveland Clinic while undergoing outpatient pre-transplant care.
• It is recommended that patients have a care-partner stay with them, especially if they are given chemotherapy to help collect stem cells.
• After patients are discharged from the inpatient hospital unit, they typically are able to return directly home, but may require temporary assistance at home from a family care-partner.
• Patients will have a follow up appointment at Taussig Cancer Institute 2 to 3 days after discharge and will most likely need someone to drive them to that appointment.

Helpful Hints for Care-Partners

Care-partners play a critical role in the transplant process. Caring for a transplant patient not only challenges your physical needs but your emotional needs as well. Here are some tips to help you prepare for this role:

• Ask the Transplant Team questions. Learn as much as you can about your loved one’s treatment, medications, and possible side effects to help you understand what is happening.
• Plan a network of support before the transplant. Having a few people lined up that you can rely on will be very helpful. Delegate one or two people to communicate medical progress to others so you don’t have to update everyone daily.
• Be prepared for changes in your loved one’s behavior. Medications, discomfort, and stress can cause your loved one to become depressed or angry. These changes are temporary.
• Take care of yourself. Be realistic about your own needs. Get enough sleep, eat properly, and take some time for yourself. You can’t offer much help if you are exhausted or overwhelmed.
• Try to maintain a balance between helping your loved one accomplish a task and actually doing the task for him or her. Allow your loved one enough time to complete activities on his or her own.
• Set attainable goals for you and your loved one. Do not attempt to do everything. By setting attainable goals, you are setting everyone up for success rather than disappointment.
• Ask other family members and friends for help. Oftentimes, they want to help but don’t want to interfere. While family and friends might not be able to help out at the hospital, let them help with daily errands or chores at home. Your family and friends will appreciate the opportunity to lend a helping hand.
• Have someone you can talk to. You are there for your loved one to listen and to offer support, but you also need a support person. Talk openly and honestly with a friend or family member.
• Consider joining a support group or talking to a social worker to address specific concerns you may have about caring for your loved one. Understanding that you are not alone and that there are others in similar situations will help you cope.
• Talk to your loved one about his or her family affairs. Although it’s not easy to discuss these topics, you should be informed of your loved one’s wishes regarding a living will and durable power of attorney for health care.

Support Groups

Support groups provide a very useful sharing experience. They offer an environment where you can learn new ways of dealing with your illness. You might want to share approaches you have discovered with others. You will also gain strength in knowing you are not facing hardships alone.

Post-Transplant Preparation Group

This inpatient education group meets on the first Wednesday of the month in the G110 lounge. This group is facilitated by a social worker and nurse coordinator from the BMT Program and provides necessary information to prepare patients and caregivers for care after transplant.

Contact:
Jane Dabney, LISW-S
Phone: 216.445.2483
Toll-free: 800.223.2273 ext. 52483

Multiple Myeloma Support and Education Group

This group is for patients with multiple myeloma, their families and friends. The group meets quarterly in the Taussig Cancer Institute, Room R3-002.

Contact:
Barb Savage, LISW-S
Phone: 216.444.6465
Toll-free: 800.223.2273 ext. 46465

Support Groups

Support groups provide patients, families, and friends an opportunity to express and share their concerns, fears, and hopes with those who are experiencing similar life challenges. Support groups are led by oncology social workers and oncology nurses, who are specialists in providing reliable information in an atmosphere of encouragement.

• Support Groups

Living with Transplant

The Leukemia and Lymphoma Society sponsors this quarterly group for adults who have undergone a blood and marrow or stem cell transplant. Participants learn the latest information and have an opportunity to discuss the unique issues faced by those who have had a transplant. Family members are welcome.

Contact:
Linda McLellan, LISW-S
Phone: 216.444.5079
Toll-free: 800.223.2273, ext. 45079

Leukemia and Lymphoma Society
Toll-free: 800.589.5721

Look Good, Feel Better

Supports cancer research, conducts educational programs and offers support groups, including “Look Good, Feel Better,” to patients and their families. Provides free booklets about leukemia.

• Look Good, Feel Better

Coping

Dealing With Changes and Loss Of Control

Facing the reality of a serious illness; fearing what is involved in blood and marrow transplantation; dealing with complex, unfamiliar medical information; and isolation from family and friends can be overwhelming and difficult to endure. You and your family may experience anxiety regarding the uncertainty of what lies ahead.

You will experience changes and may not be as independent as you want to be. People will experience some changes and role losses that are temporary, and some longer-term changes in lifestyle may occur. While going through transplantation, common role changes may involve employment or work, parenting and family responsibilities, and physical activity. People who are used to being independent and like to feel in control may find such changes very frustrating and difficult to cope with.

A person’s ability to cope is strongly influenced by his or her perceptions of a situation. If you believe challenges facing you are insurmountable, you may feel helpless or hopeless. Obtaining more information, asking about how other people have coped, and turning to others for support are helpful coping strategies and may change the way you view your situation.

Give yourself permission to not handle all things well all the time; you are only human and will have times when you feel discouraged or are in a bad mood. Just guard yourself against getting stuck in negative thinking and feelings.

Helpful Coping Strategies

• Review what has been helpful and not helpful to you in the past when dealing with stressful or difficult situations.
• Focus on building on your strengths, and stay open to new ideas and strategies.
• Utilize your support network of friends and family. Having loved ones or friends visit or call you can be very comforting. Discuss your feelings about what is happening with your friends and family. Allow family and friends to help you sort through the information you receive.
• Talk with other patients and families about blood and marrow transplantation. Talk with your social worker about the Leukemia and Lymphoma Society’s “FirstConnection” program. Please see the section, “Support Groups” for more information.
• Make use of resources and support services at The Cleveland Clinic and in the community. This notebook contains information about available resources that can help you learn about your disease and help you feel comfortable with your treatment.
• Actively participate in your treatment plan. You are a valuable and key person in your treatment plan. Stay informed and communicate your questions and ideas to the medical team. Do not be afraid to ask your doctor, nurse or other health care provider to repeat any instructions or medical terms that you don’t understand. Your Blood and Marrow Transplant Team is always available to answer your questions and address your concerns.
• Focus on things you can influence. Let go of things you can't change or control, and focus on doing things that will help your situation.
• Focus on what needs to be done here and now. It is easy to get overwhelmed if you think about everything that you may eventually have to deal with. Focus on what you are currently dealing with and can work on.
• Accept your reactions and your natural pace. Accept how you feel about events and give yourself time to adjust and process thoughts and feelings about what is happening.
• Give yourself things to look forward to. Your energy has been focused on treatment, but there are still things you can enjoy, and you need to plan simple pleasures to which you can look forward.
• Focus on what you have. Try to focus on what you still have and have gained versus what you have lost or haven't accomplished yet.
• Accept the unexpected. Accept that there are events you cannot control. Few things will happen exactly as expected. Plan for delays, setbacks and surprises.
• Reduce Stress: When you are facing cancer, stress can build up and affect how you feel about life. Prolonged stress can lead to frustration, anger, hopelessness and, at times, depression.

Tips for Reducing Stress

• Be assertive instead of aggressive. "Assert" your feelings, opinions, or beliefs instead of becoming angry, combative, or passive.
• Learn to relax.
• Exercise as often as you can.
• Eat well-balanced meals.
• Rest and sleep. Your body needs time to recover from stressful events.
• Learn to Relax There are a number of exercises you can do to relax. These exercises include breathing, muscle and mind relaxation, relaxation to music, and biofeedback. A few for you to try are listed below. First, be sure that you have a quiet, distraction-free location. Try to find a comfortable body position. Sit or recline on a chair or sofa. Also, have a good state of mind -- try to block out worries and troubling thoughts.

Two-Minute Relaxation

Switch your thoughts to yourself and your breathing. Take a few deep breaths, exhaling slowly. Mentally scan your body. Notice areas that feel tense or cramped. Loosen up these areas, letting go of as much tension as you can. Rotate your head in a smooth, circular motion once or twice. (If any movement causes pain, stop immediately.) Roll your shoulders forward and backward several times. Let all of your muscles completely relax. Recall a pleasant thought for a few seconds.

Take another deep breath and exhale slowly. You should feel relaxed. Mind Relaxation Close your eyes. Breathe normally through your nose. As you exhale, silently say to yourself the word "one," a short word such as "peaceful," or a short phrase such as "I feel quiet." Continue for 10 minutes. If your mind wanders, gently remind yourself to think about your breathing and your chosen word or phrase. Let your breathing become slow and steady.

Deep Breathing Relaxation

Imagine a spot just below your navel. Breathe into that spot and fill your stomach with air. Let the air fill you from the stomach up, then let it out, like deflating a balloon. With every long, slow breath out, you should feel more relaxed.

Lodging & Parking

Hospital Stay, Lodging, & Parking

If you are from out of town, you and your loved ones may need temporary housing while you recover from your blood and marrow transplant.

Patients needing Allogeneic Blood and Marrow Transplants
You will need to stay within a one-hour drive for a minimum of 100 days after your blood and marrow transplant.

Patients needing Allogeneic Reduced Intensity Blood Transplant
You need to stay within a one-hour driving distance from Cleveland Clinic for a minimum of 100 days after your allogeneic blood and marrow transplant. Your condition will determine your length of stay in Cleveland.

• Parking Services

Parking Services

Cleveland Clinic offers options for purchase of discounted parking tickets; these can be purchased at the Parking Valet Desks. Please refer to the Cleveland Clinic map for parking garage locations.

• Parking Services at Cleveland Clinic

Lodging

The expense of lodging while undergoing treatment in Cleveland can be burdensome; therefore, we recommend that you check with your health insurance to determine if your policy offers a lodging and travel benefit associated with your transplantation. Many Hotels offer a discount when lodging is needed for transplant/medical care. 

• Hotels and Lodging Options at Cleveland Clinic

The American Cancer Society has negotiated some discounted hotel rates please click the link below for more details.

• American Cancer Society's Hope Lodge

Hope Lodge
The American Cancer Society's Hope Lodge is a unique option for adults who need temporary, no-cost accommodations while receiving cancer treatment and who live a distance from Cleveland. The Hope Lodge is located just blocks away from Cleveland Clinic. Oncology patients and/or families can stay here while receiving treatment in Cleveland.

Patients must have a care-partner stay with them at Hope Lodge. If you wish to stay at Hope Lodge, it is recommended that you make back-up lodging arrangements because there is a waiting list, and room availability may not be known until just before your requested check-in date.

Hospital Tour

To arrange a tour of the inpatient Blood and Marrow Transplant Unit and the Hematology/Oncology Unit, please contact your blood and marrow transplant social worker.

Visitors

Having family and close friends visit can be very helpful while recovering from your blood and marrow transplant. It is a good idea to think ahead about having your family and friends take turns visiting so that you are not overwhelmed with company. You may want to ask others to call ahead before coming to see if you feel up to a visit. It is important that visitors wash their hands before entering your room. Visitors should not come if they have an infectious illness like the flu or common cold.

Visiting Hours
The Blood and Marrow Transplant Unit does not enforce strict visiting hours. However, the staff requests that the number of visitors at one time be limited during your blood and marrow transplant recovery. Having a family member stay in the hospital room overnight is permitted when your condition after your blood and marrow transplant warrants this.

Children
Children are allowed to visit you during your inpatient stay, but they may only visit in your room with your door closed. Children are not allowed in the patient lounge or exercise room. Please talk with your social worker about ways to plan ahead for temporary separation from your children or grandchildren prior to your blood and marrow transplant. Your social worker can provide counseling to assist with any emotional concerns your children may experience.

Family Lounge / Exercise Room
The Blood and Marrow Transplant Family Lounge has comfortable seating, a television and DVD player, a computer with Internet access, books, and movies. The exercise room has treadmills and a stationary bike.

Hospital Room

Telephone
A telephone with an individual phone number is provided in all rooms. A daily fee for the telephone will appear on your home telephone account. Please talk to your social worker if this will be a financial burden for you. Most people decline the phone service and utilize their cell phone instead.

Please note: You will not know your telephone number until you have checked into your room.

Television
A color television with a DVD player is provided in every room. Commercial and limited cable channels as well as several Cleveland Clinic channels are free of charge.

Internet Access
Some patients choose to bring a laptop or mobile device with them. Cleveland Clinic is not responsible for this equipment. Internet access is available through a wireless network connection. A computer with internet access and a printer is available in the Family Lounge on the transplant unit.

What will my address be at the Cleveland Clinic?

Your Name
Cleveland Clinic
G110
9500 Euclid Ave.
Cleveland, Ohio 44195-5232

For assistance in the hospital

Our goal is to provide you with the best possible care in an atmosphere that is pleasant, educational and supportive. If there is anything we can do to improve your hospital stay during and after a blood and marrow transplant, please do not hesitate to ask. If you need anything or have questions or concerns, you can use your “call bell.”

Resources

Getting in touch with community services may be helpful to you and your family. These organizations and programs represent just some of the resources available to you. Individual counseling with a social worker may be helpful if you have needs that are not met by these resources. Please contact your social worker if you need more assistance.

Please note: These resources are provided for your information only. Inclusion does not imply endorsement by Cleveland Clinic. The information provided by these resources should not replace the advice of your health care providers.

In this section, you’ll find the resources specific to blood and marrow transplants that your social workers recommend as a starting point for support services and assistance.

Patient Support Services

• Patient Support Services

Cleveland Clinic Cancer Answer Line
Toll-free: 866.223.8100

Reflections at Cleveland Clinic
Phone: 216.444.3527
Toll-free: 800.223.2273 ext. 4-3527
Website: Reflections Wellness Program
Free service to patients undergoing cancer treatment. Sessions are private with a licensed aesthetician and include:

• One-hour facial
• Make-up application with instruction
• Reiki for relaxation
• Guided imagery
• Reflexology

Blood and Marrow Transplant Resources

The Leukemia and Lymphoma Society
Phone: 914.949.5213
Toll-free: 800.955.4572
Email: lsa2000@aol.com
Website: www.leukemia-lymphoma.org
Services include health education, peer-to-peer support, support groups and limited patient financial aid. Supports cancer research and provides information and support to patients with leukemia, lymphoma and multiple myeloma.

BMT Infonet - (Blood and Marrow Transplant Information Network)
Phone: 847.433.3313
Toll-free: 888.597.7674
Email: help@bmtinfonet.org
Website: www.bmtinfonet.org
Provides information about blood and marrow and blood stem cell transplant, and provides an Internet connection between transplant patients and survivors.

Lymphoma Research Foundation of America
Phone: 310.204.7040
Toll-free: 800.500.9976
Email: helpline@lymphoma.org
Website: www.lymphoma.org
Newsletter, e-mail updates, support, helpline, information on treatment and clinical trials. Provides $500 grant to six patients each month for non-medical expenses.

American Cancer Society
Phone: 404.320.3333
Toll-free: 800.227.2345
Website: www.cancer.org

Look Good, Feel Better National
Website: www.lookgoodfeelbetter.org
Supports cancer research, conducts educational programs and offers support groups, including “Look Good, Feel Better,” to patients and their families. Provides free booklets about leukemia.

Cancercare
Toll-free: 800.813.HOPE (4673)
Website: www.cancercare.org
A national, non-profit organization whose mission is to provide free professional help to people with cancers through counseling, education, information and referral, and direct financial assistance.

National Marrow Donor Program (NMDP)
Phone: 612.627.5800
Toll-free: 800.526.7809
Donor Information: 800.MARROW2
Website: www.marrow.org
Facilitates marrow and blood stem cell transplants for patients who do not have a matched donor in their family. Is a network of national and foreign donation centers, collection centers, transplant centers and minority recruitment groups.

Office of Patient Advocacy
Toll-free: 888.999.6743
Assists patient who lack funding for unrelated donor search and/or procurement.

For Young Adults

Canteen: Supporting Young People Living With Cancer
Website: www.canteen.org.nz
Their mission statement is to support, develop and empower young people aged 13-24 years living with cancer or a life-threatening blood disorder and their teenage siblings. We do this by providing a peer support network and focused educational and developmental programmes to assist them in moving forward with their lives.

American Cancer Society
Phone: 404.320.3333
Toll-free: 800.227.2345
Website: www.cancer.org

Look Good, Feel Better National
Website: www.lookgoodfeelbetter.org
Supports cancer research, conducts educational programs and offers support groups, including “Look Good, Feel Better,” to patients and their families. Provides free booklets about leukemia.

Look Good, Feel Better at Cleveland Clinic
Toll-free: 888.227.6446
Website: Look Good, Feel Better at Cleveland Clinic

For Children

Kids Konnected
Phone: 949.582.5443
Founded under the premise that when a parent gets cancer, the entire family is affected. Children facing the same fears and sharing similar experiences can be helped by others in a similar situation.

Cancer Care For Kids
Website: www.cancercare.org

Fertility

Fertile HOPE
Toll-free: 1.888.994.HOPE
Website: www.fertilehope.org
A non-profit organization dedicated to helping cancer patients faced with infertility.

Staying Connected to Family / Friends Online

The Status.com
Phone: 907.677.2160
Toll-free: 800.290.2292
Website: The Status.com
Website to keep family and friends updated on the patient’s condition. Family and friends can write messages to patient. Requires secured password to protect patient’s confidentiality.

Lotsa Helping Hands
Website: www.lotsahelpinghands.com
Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during a crisis.

Fund-Raising Organizations

National Foundation for Transplants
Phone: 901.684.1697
Toll-free: 800.489.3863
Email: jhill@transplants.org
Website: www.transplants.org

National Transplant Assistance Fund
Phone: 610.353.9684
Toll-free: 800.642.8399
Email: NTAF@transplantfund.org
Website: www.transplantfund.org

Medication Assistance

Needy Meds
Email: drugmaven@earthlink.net
Website: www.needymeds.org
Lists pharmaceutical manufacturers who provide drugs free of charge to patients with limited financial resources.

Rx Assist
Phone: 877.844.8442
Website: www.rxassist.org
Provides information about public and private pharmaceutical patient assistance programs, including drug discount cards.

Financial / Insurance

Social Security Administration
Contact your local office or 800.772.1213
Website: www.ssa.gov
If a person is likely to be unable to work for 12 months while undergoing treatment, applying for Social Security Disability is an option.

Ohio Department of Insurance
2100 Stella Court
Columbus, OH 43215
Toll-free: 800.686.1578
Website: www.insurance.ohio.gov/

Patient Advocate Foundation
700 Thimble Shoals Blvd, Suite 200
Newport News, VA 23606
Phone: 757.873.6668
Toll-free: 800.532.5274
Email: info@patientadvocate.org
Website: www.patientadvocate.org

Serves as an active liaison between the patient and his or her insurer, employer or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis.

Complementary and Alternative Medicine

Cleveland Clinic's Center for Integrative Medicine
Phone: 216.986.4325

Health Journeys: The Guided Imagery Resource Center
Email: info@healthjourneys.com

National Center for Complementary and Alternative Medicine (NCCAM)
Phone: 301.519.3153
Toll-free: 888.644.6226
TTY: 866.464.3615 (for hearing impaired)
Email: info@nccam.nih.gov
Website: www.nccam.nih.gov

Other Online Resources

• Be The Match
• Post-transplant screening and preventive practices
• BMT InfoNet
• LiveStrong - Young adult cancer survivors